Thursday, 26 March 2015

DR FALLON PRESENTING AT LYME DISEASE OPEN DAY HELD BY PHE, LONDON




Dr Brian Fallon Keynote speaker at Lyme Disease Open Day held by Public Health England on 25th March 2015

Quite a historic occasion for  Public Health England to invite such a well respected doctor and researcher to present on - A review of recent evidence on long term consequences of Lyme disease.

Dr Fallon is director of Lyme and Tick-Borne Diseases Research Centre, Columbia University USA.
http://www.columbia-lyme.org/

I understand that the slides will be made available either on PHE website or Lyme disease Action Website http://www.lymediseaseaction.org.uk/

however for anyone interested some of the slides were also presented at Poughkeepsie in 2014
https://www.youtube.com/watch?v=DEwVEN2kT_A

Dr Fallon talked about the emerging science, mentioning that there were several promising tests in the pipeline and encouraged patients and charity groups to continue with advocacy and pressure on authorities to invest in research and awareness.

The meeting was Chaired by Dr Jenny Harries, Regional Director, South of England PHE who did an excellent job of keeping the presentations running to time and involving the audience in the questions and answers at the end. Dr Harries said she was aware of the short notice of the meeting but wanted to hold the meeting and there were (timing) problems with the pending election

The Welcome and Introduction was given by the Countess of Mar who once again showed her depth of understanding of the problems over testing, complexities of the disease and the suffering of patients who go on to seek private treatment - she said 'instead of sniping at private providers they need to find out what they are offering and learn.' She said she 'understands the awfulness patients feel when they are unable to get treatment but we need to work together'

Dr Tim Brooks Clinical services director RIPL gave an overview of PHE Activities.
Plans to raise awareness of Lyme at the beginning of the Lyme season.
Despite misconceptions we have open minds about infectious diseases.
Without evidence we can not make policy or do studies.

Dr Roger Evans Consultant Clinical Scientist, Raigmore Hospital, Inverness - The Scottish view on Lyme Disease
'We are frustrated because we recognise there is a lot of work needs to be done'
He is currently working with GP's in Scotland to gain a better understanding of the true numbers involved not just the serologically positive cases, so that economic costs can be assessed with the hope that this will in turn attract better funding for research.

Dr Jolyon Medlock Head of Medical Entomology & Zoonoses Ecology, PHE and colleague talked about tick collection scheme and mapping of areas found in UK. Feeding back information to the public as discussed in an ongoing scheme with Wiltshire Council but hope to extend to other areas.

Dr Randi Eikeland , Head of the National Advisory Unit for Tick - borne Diseases at Sorlandet Hospital, Norway, discussed Neuroborreliosis - Challenges and experiences from Norway. Her work seemed to revolved only around acute seropositive cases and relied heavily on spinal taps with a significant number of patients having symptoms months later but unable to find evidence of a persisting infection.

Dr Sue Best Director of the National Serology Reference Laboratory Australia - A program for a comprehensive review of potential diagnostic tests for Lyme Disease.
Dr Best although she said she was very experienced in working with HIV was clearly new to Lyme Disease and I suspect took away more information than she contributed to the meeting. If she gains funding for her studies only time will tell whether they will be useful, especially in view of the search for better, more precise testing looking for active infection and the report of several promising new tests as indicated by Dr Fallon.

Stella Huyshe - Shires, Chair of Lyme Disease Action - Working together?

Demetrios Loukas a patient who had initiated and organised the parliamentary meeting in January spoke - he thanked Dr Brooks for attending the Parliamentary meeting and for agreeing to have  a meeting with Dr Armin Schwarzbach and Dr Chris Newton to discuss testing methods.

There was a questions and answer session which I understand was due to be documented and be made available.

As any links to slides and questions and answers become available I will add to this post.

For a couple of photos of the event see Lyme Disease Action Facebook page
 https://www.facebook.com/122058224483868/photos/pcb.897931963563153/897929623563387/?type=1&theater
and
https://www.facebook.com/122058224483868/photos/pcb.897931963563153/897930723563277/?type=1&theater






Tuesday, 10 March 2015

DR JUDY MIKOVITS - INFECTIOUS PATHOGENS AND THEIR ROLE IN CHRONIC DISEASE



Dr Judy Mikovits signing PLAGUE - 'One Scientist's Intrepid Search for the Truth about Human Retroviruses and Chronic Fatigue Syndrome (ME/CFS), Autism and other chronic Diseases'

On Sunday 8th March AONM - Academy of Nutritional Medicine held a conference - Lifting the Veil -Infectious Pathogens & Their Role in Chronic Disease.

From AONM website - 'On Sunday March 8th 2015, the Academy of Nutritional Medicine (AONM) is holding a ground-breaking conference led by top specialists from around the world, all of them renowned for their expertise on infectious pathogens and chronic disease.

The specialists’ combined approaches are revolutionary, and raise serious questions about how and why it is that treatments that are insisted upon by mainstream medicine do not effectively deal with the root causes of certain conditions.' go to the website for further information http://www.aonm.org/lifting-the-veil.html

This was an excellent and very interesting conference especially so for me as it brought together International experts in a variety of fields giving the audience much thought provoking information.

All the detailed presentations moved along at a fast pace making it only possible for rudimentary note taking. I understand there will be a DVD available through AONM.

It was a great treat for me to meet Dr Judy Mikovits, having followed, on line, events unfolding over her research with XMRV a retrovirus and possible connections to patients with ME/CFS. 

I recently read Plague, by Kent Heckenlively and Judy Mikovits -  available on Amazon

A gripping story of research controversies, something many in the Lyme, Autism and ME/CFS communities are already well aware of, but perhaps not to the lengths Judy was subjected to. A thought provoking, sobering and perhaps scary read, but something I recommend everyone read.

Judy's excellent presentations will be available on the DVD but she has already posted similar on the website which she shares with Dr Ruscetti 

Professor Malcolm Hooper Introduced the meeting with his speech - Looking for clarity and Understanding on Chronic Syndromes of Unknown Origins giving a brief history of the troubles ME/CFS, Gulf War and Multiple Chemical Syndrome patients have endured over many years.

Professor Puri treated us to two presentations one Lyme Disease including Cardiovascular, Urological and Neuropsychiatric Sequelae and the other Autism - gut infection and Fibromyalgia research news.

Dr Armin Schwarzbach shared his knowledge of Multiple infections by Borrelia burgdorferi and other tick borne pathogens - symptoms, diagnostic tests and consequences for therapy.

Dr Philip Keilman discussed Natural Therapeutic Interventions for Patients with Chronic Infection.

Thank you to AONM for having organised such an interesting and successful event.


Wednesday, 18 February 2015

WHAT CAUSES MORGELLONS DISEASE?

Morgellons Disease has been described as a delusional belief, yet patients struggle with a complex multisystem illness with little or no help from their doctors.

A recent research paper now reveals the scientific evidence that shows Morgellons Disease is an infectious disease.

Exploring the association between Morgellons disease and Lyme disease: identification of Borrelia burgdorferi in Morgellons disease patients  

Marianne J Middelveen1, Cheryl Bandoski2, Jennie Burke3, Eva Sapi2, Katherine R Filush2, Yean Wang3, Agustin Franco3, Peter J Mayne1 and Raphael B Stricker14*

link here 

Abstract

Background

Morgellons disease (MD) is a complex skin disorder characterized by ulcerating lesions that have protruding or embedded filaments. Many clinicians refer to this condition as delusional parasitosis or delusional infestation and consider the filaments to be introduced textile fibers. In contrast, recent studies indicate that MD is a true somatic illness associated with tickborne infection, that the filaments are keratin and collagen in composition and that they result from proliferation and activation of keratinocytes and fibroblasts in the skin. Previously, spirochetes have been detected in the dermatological specimens from four MD patients, thus providing evidence of an infectious process.

Methods & Results

Based on culture, histology, immunohistochemistry, electron microscopy and molecular testing, we present corroborating evidence of spirochetal infection in a larger group of 25 MD patients. Irrespective of Lyme serological reactivity, all patients in our study group demonstrated histological evidence of epithelial spirochetal infection. Strength of evidence based on other testing varied among patients. Spirochetes identified as Borrelia strains by polymerase chain reaction (PCR) and/or in-situ DNA hybridization were detected in 24/25 of our study patients. Skin cultures containing Borrelia spirochetes were obtained from four patients, thus demonstrating that the organisms present in dermatological specimens were viable. Spirochetes identified by PCR asBorrelia burgdorferi were cultured from blood in seven patients and from vaginal secretions in three patients, demonstrating systemic infection. Based on these observations, a clinical classification system for MD is proposed.

Conclusions

Our study using multiple detection methods confirms that MD is a true somatic illness associated with Borrelia spirochetes that cause Lyme disease. Further studies are needed to determine the optimal treatment for this spirochete-associated dermopathy.

The research paper is discussed on PR Web release here  

There is very much of interest in this important paper for those with Morgellons but also in respect of Lyme Disease.
Just a few observations from me from a Lyme Disease perspective-
1. International collaboration of authors and also acknowledging supportive discussions. ( Thanks to The Charles E. Holman Morgellons Disease Foundation for funding - Grant money from governments for Lyme disease have produced little over the past 30+ years to help patients, according to the late Willy Burgdorfer here )
2. Technology used to identify without question the organisms of Borrelia present rather than the hit or miss that many patients are left with - antibody tests.
3. This study shows the false negative antibody tests in some patients.
4. This study highlights persistent infection despite many patients having prior treatment of antibiotics.
5. Systemic infections as indicated by finding presence of Borrelia in blood, tissue and vaginal fluid in various patients.
6. Interesting to read the support from Dr Alan MacDonald who recently published on his method of identifying Borrelia using FISH and Beacon Probes here The comments on this article are worth noting.
An earlier post on my blog about Dr MacDonald's work using FISH and Beacon Probes  here 

Thursday, 5 February 2015

ECONOMIC COSTS OF LYME DISEASE LESSONS FOR PHE







































BEAUTY AND THE WEE TICK - Photo taken in Killarney National Park Ireland.

An interesting article published today in Science Daily should be heeded by our Health Authorities in UK and Ireland, taking tick borne diseases more seriously may help to reduce our rising healthcare costs.

Johns Hopkins Bloomberg school of public health looked at cases of Lyme Disease.

'New research from the Johns Hopkins Bloomberg School of Public Health suggests that a prolonged illness associated with the disease is more widespread and serious in some patients than previously understood. With an estimated 240,000 to 440,000 new cases of the tick-borne illness diagnosed every year, the researchers found that Lyme disease costs the U.S. health care system between $712 million and $1.3 billion a year -- or nearly $3,000 per patient on average -- in return doctor visits and testing, likely to investigate the cause of some patients' lingering symptoms of fatigue, musculoskeletal pain and memory problems. These visits come after patients have finished their original course of antibiotics.'

'The Centers for Disease Control and Prevention estimates 10 to 20 percent of those treated for Lyme disease with the recommended two-to-four week course of antibiotics continue to have symptoms. But, in the new study, the researchers found that more than 63 percent of those treated for Lyme disease had at least one PTLDS-related diagnosis -- a rate 36 percentage points higher than those who did not have Lyme disease.'


'The study's lead author John Aucott, MD, an assistant professor of rheumatology at the Johns Hopkins University School of Medicine, says it does no good to keep debating the existence of long-term problems related to Lyme disease while people are suffering a debilitating illness. And he says that increasing awareness of potential complications is crucial to avoid misdiagnosis and unnecessary medical testing.
"These patients are lost," he says. "No one really knows what to do with them. It's a challenge, but the first thing we need to do is recognize this is a problem. There's not a magic pill. These patients already got the magic pill and it didn't work."
"Health care costs, utilization and patterns of care following Lyme disease" was written by Emily Adrion, MSc; John Aucott, MD; Klaus Lemke, PhD; and Jonathan P. Weiner, DrPH.
This research was funded by a grant from the Lyme Disease Research Foundation.'

This study is based on patients diagnosed early in their illness and treated, but here in the UK and Ireland there is evidence through patient charity groups, that patients are rarely diagnosed and treated at that early easier to treat stage, thus increasing the numbers falling into a debilitating illness.

All too often Public  Health England quotes the numbers of positive serological cases currently about 1000 a year in England and Wales but fail to recognise that even CDC accept now that the true figures are likely to be 10x that of positive serological cases.

You do the maths but I make that £20,007,000 a year for England and Wales.

At a recent Parliamentary meeting on Lyme disease - our PHE 'expert' claimed that being an island we had less cases, but this fails to consider two important factors - one that ticks are carried by birds Intercontinentally and that Borrelia infection (Lyme Disease) has been around for 15 million years.

Lack of research and lack of a reliable test may have more to do with the lack of cases found in the UK and Ireland.

Link to Parliamentary meeting here http://lookingatlyme.blogspot.co.uk/2015/01/lyme-disease-parliamentary-meeting.html


Friday, 30 January 2015

WHAT CAUSES ALZHEIMER'S DISEASE OR DEMENTIA?



Lyme Disease and Dementia, Lecture and Power Point presentation by Dr Alan MacDonald from John E Grinstein on Vimeo.

What causes Alzheimer's Disease or Dementia?

Such an important question - The Alzheimer's Society estimates that there will soon be 850,000 people in Britain living with dementia, the majority of whom are wholly or partly due to Alzheimer's disease. The economic costs of this will rise to over £26 billion.

The above Vimeo lecture from Dr Alan MacDonald details his work and modern technological developments that are able to show Borrelia infection in Alzheimer's brains.

With latest technology Flouresence In Situ DNA Hybridisation  (FISH) and DNA Borrelia Burgdorferi specific probes he shows further studies he has done with peripheral blood  https://cloud.gonitro.com/p/iaaxzXsfbUBRef55xbwmcM
and Spinal Fluid https://cloud.gonitro.com/p/c3E6l8iDP5Jl1c0dUcG3Bu

Dr MacDonald further says -

Molecular Beacon DNA probes for two open reading frames in the Borrelia burgdorferi chromosome have been developed and Validated for their specificity in hybridizing uniquely to burgdorferi Borrelia DNA.


RESULTS OF VALIDATION STUDIES:
Borrelia burgdorferi pure culture strain ATCC 35210 = POSITIVE
Borrelia Hermsii ,pure culture = NEGATIVE
Also Negative results with ALL. OF. THE FOLLOWING. : Normal human blood, normal by cal squamous epithelial cells, 
oral bacterial microbes, E.coliCandida albicans

Cerebrospinal fluid submitted from a volunteer for molecular evaluation for possible Borrelia DNA IN THE SPINAL FLUID.
( Hospital testing of the spinal fluid produced Normal glucose, Normal protein, normal white blood cell and red blood cell counts,No bacteria by culture of spinal fluid, no spirochetes seen in cytology examination


MolecularBeacon DNA PROBE RESULTS : Positive for Borrelia burgdorferi spirochetes


Conclusions:
KENTUCKY resident, adult male, chronically ill, exact cause of chronic illness not diagnosed after multiple physician visits
Lyme ELISA : NEGATIVE
Lyme WESTERN BLOT : NEGATIVE ( only 41 KD band present)
Patient gives a history of multiple tick bites in Kentucky, no erythema Migrans rash noted at any time


Summation: DNA PROBES (2) demonstrate. Many Borrelia burgdorferi in the cerebrospinal fluid by 
FISH method ( Fluorescence In Situ Hybridization) . Many spirochetes seen in fresh up concentrated spinal fluid
By FISH, indicating a very heavy load of infection.
No host immune or leukocytic , macrophage response to the spinal fluid BorrelIa burgdorferispirochetes.
Chronic illness - un-categorized with conventional medical testing - 
Diagnosis: Chronic Lyme Borreliosis, co- infection status not yet addressed by additional proper testing


and from Dr MacDonald -

The FISH DNA hybridization. Will settle the heretofore contentious debates about the REALITY OF CHRONIC BORRELIA ILLNESSES.

I WILL PROVIDE THE METHODOLOGY AND THE DETAILS OF MANUFACTURE OF THE 
MOLECULAR beacon DNA PROBES IN AN UPCOMING PEER REVIEWED PUBLICATION.

AN Epifluorescent microscope is required to accomplish the microscopic exams.

For a limited time I will continue to receive blood smears and Spinal fluid specimens
To extend these observations.

I will donate the peer reviewed methodology Free of charge to persons who 
Own an Epifluorescent microscope.


The Inconvenient Truth of the reality of Seronegative Lyme Borreliosis or IgM reactive serology in Patients with " Late " chronic Borreliosis. Will be embraced as multiple scientists in international Laboratories. Implement the FISH METHOD. for Borrelia detection in blood, seminal fluid, spinal fluid,amniotic fluid,
Arteritis
Or...chamber or the eye Aqueous ...
and biopsies from solid organs or examination of autopsy tissues, with the FISH METHOD USINGBORRELIA BURGDORFERI

DNA hybridization will settle the contentious category of chronic Borreliosis,
Once and for all time...

Links to additional FISH POSITIVE RESULTS FROM CHRONIC BORRELIOSIS AND FROM AUTOPSY CHRONIC BORRELIOSIS: 


http://www.lymeneteurope.org/forum/viewtopic.php?f=7&t=5681

Further information and images - 
http://www.lymeneteurope.org/forum/viewtopic.php?f=5&t=5664&p=41363#p41450
http://www.lymeneteurope.org/forum/viewtopic.php?f=6&t=5695
http://f1000.com/posters/browse/summary/1097535


For over 100 years it has been known that the spirochete Treponema pallidum, the causative agent of Syphilis causes slowly progressive dementia, cortical atrophy and amyloid deposition  (1)

It is recognised that spirochetal infection Borrelia (Lyme Disease) can also cause Alzheimer's and Dementia (1,2,3,4). 
Sadly over reliance on unreliable antibody tests has held back the science in the field of diagnosing Borrelia infections. (5)

Prof Judith Miklossy (1) and the Lancashire University Dental department found Dental spirochetes in Alzheimer's brains. (3,6)


Tuesday, 27 January 2015

LYME DISEASE SPIROCHETES ENTER AND LEAVE RED BLOOD CELLS -PROF MORTON LAANE

Interview with Morton Laane  on blood microscopy for visualising Lyme Disease spirochetes.


Story at-a-glance 
✓ The retired biologists Morten Laane and Ivar Mysterud were subject to heated debates in the Norwegian media last year due to their use of microscopy as a tool to examine blood from people who have become chronically ill following tick bites. 
✓ In this interview Morten Laane deepens central aspects around microscopy. In the previous interview Ivar Mysterud presents his view of the criticism. 
✓ The microscopy methods used have deep historical roots, however, are now considerably improved for detailed observations and digital recordings of bacteria and parasites which reside in red blood cells. 
✓ Everyone can easily look through a microscope; however, it demands great and time-consuming work and experience to become decent at microscopy. An understanding of the mechanisms of the microscope is required, and the person executing the microscopy needs to possess interdisciplinary experience when interpreting what is observed in the specimens. 
✓ Studying the presence of microorganisms in blood is thus demanding. 
✓ In comparison to other test methods, microscopy shows the immediate situation in a specimen. 
✓ Laane rejects the criticism that they have not observed real spirochetes (spiral-formed bacteria) and co-infections in the blood of patients sick after tick bites. The structures are not protein fragments from blood cells during decomposition, by some called pseudo spirochetes. He has techniques to distinguish beyond any doubt the difference between spirochetes and pseudo spirochetes and has filmed spirochetes that actively move in and out of red blood cells. Laane also finds it incorrect to call anything pseudo spirochetes and he challenges the argument from opponents suggesting that general basic concepts of blood microbiology may be wrong. 
✓ Laane is equally strong in his persuasion that microscopy is an invaluable tool for studying blood of people who have become chronically sick after tick bites. The results from a new, ongoing research project might indeed become useful for this group of patients.

The above is taken from - English translation of article in Helsemagasinet VOF no. 6/2014 This is a translation of an interview published in September 2014 in Helsemagasinet vitenskap & fornuft (VOF; see www.vof.no) no. 6/2014 on pages 78–81. It directly follows an interview with Ivar Mysterud on pages 74–77 in the same issue. It is translated by Iver Mysterud and slightly edited in cooperation with Morten Laane to better fit 

Go to the main article for a more detailed read - 
http://vof.no/wp-content/uploads/2015/01/Borrelioseintervjuer-engelsk-Laane-oppslag.pdf 

'Some of your critics have objected that you do not see spirochetes in the microscope; however, instead observe protein fragments from blood cells during decomposition or other artifacts, by some called pseudo spirochetes. What is your comment to such arguments? 
– Protein fragments from blood cells during decomposition do not move in and out of red blood cells in orderly patterns, Laane answers – the movements we observe are typical for living structures. – We study living organisms and have filmed spirochetes when they move out of and into red blood cells. The objection concerning pseudo spirochetes is misunderstood and irrelevant, he continues.

Earlier post on Morton Laane's work 
http://lookingatlyme.blogspot.co.uk/2013/03/test-for-borrelia-lyme-disease.html

Prof Laane paper http://phys.org/news/2013-06-classic-microscopy-reveals-borrelia-bacteria.html#jCp

Prof Morton Laane paper go to the bottom of this link for access to the full paper http://www.biomedicalreports.org/index.php?journal=bbr&page=article&op=view&path%5B%5D=98 


Video of Borrelia in the blood and what looks like borrelia from red blood cells http://www.youtube.com/watch?v=YxSHL9xGCgo




 

Monday, 26 January 2015

LYME DISEASE PARLIAMENTARY MEETING UK

Denise Longman presentation to a Parliamentary meeting 

on Lyme Disease on 19th January 2015

Links to presentation with slides can be found on 
Informed Lyme Patients – Presenting our Concerns about Lyme Borreliosis
Ladies and Gentlemen:
I’m speaking today because it’s my duty to the 12,000 plus signatories to the UK Lyme Petition, which demands more public awareness, reliable diagnoses and adequate treatment for Lyme disease. And also to explain why patients are dissatisfied with PHE’s management of borreliosis in England.
Grave Concerns
Congenital transmission
Alzheimer’s disease and other Dementias
Sudden deaths from stroke and heart disease
Blood and tissue banks contaminated
Public and doctors not aware of the true incidence
Chronic disease denied - therefore prevalence not monitored
Patients denigrated
Congenital transmission
We have families in this room and on our Facebook group who have found that their children are infected, most probably from birth.
There is documented evidence for placental transmission, which first dates back to 1985, and now amounts to 28 peer reviewed papers and 88 Medline links showing that this occurs. In summary, if antibiotics are used during pregnancy the outcome is favourable; but if not, 67% of pregnancies will have a bad outcome.
Borreliosis is damaging not just the generation who are infected now, but the next generation as well.
Alzheimer’s disease and Lyme dementia
The Alzheimer's Society estimates that there will soon be 850,000 people in Britain living with dementia, the majority of whom are wholly or partly due to Alzheimer's disease. The economic costs of this will rise to over £26 billion.
Borreliosis infections have been documented to produce states of dementia, and French researchers this year recommend screening for Borrelia in all dementia patients, as well as in the Alzheimer’s type of neuro-degenerative cases.
They had found “ over a ten-fold increased occurrence of Alzheimer’s Disease when there is detectable evidence of spirochaetal infection”
For more information on this topic and the DNA evidence from Dr MacDonald’s work, see the Spirochaetal Alzheimer’s Association web site. 
Imagine if antibiotic therapy could halt or partially reverse the disease! The benefit to suffering humanity would go hand in hand with a huge benefit to the Exchequer. Will the Department of Health act on this information and screen Alzheimer’s patients for borrelia?
Chronic Disease and persistent infections denied.
Over the decades the Department of Health have not informed the public that borreliosis is easy to catch, hard to cure, and can become a persistent infection. Yet there are 273 peer-reviewed publications showing persistence of borreliosis in animals and humans after the standard or even extended antibiotic therapy.
Very sick patients, with the same symptoms as they had before treatment, are being told they have a post Lyme syndrome – which is a term that refers to no defined pathology.
ME CFS and Fibromyalgia
Large numbers of ME/CFS or Fibromyalgia patients have been discovering that they have Lyme disease after private tests, the figures are 80 to 90% according to 3 prestigious ME doctors. Yet NHS doctors rarely consider Lyme disease as a differential diagnosis in suspected ME/CFS cases, despite a directive to do so in the NICE guidelines. But who can blame them, when PHE maintains that Lyme is such a rare disease, and if the tests miss so many cases?
What is the true incidence in the UK?
Lyme patients are bewildered by figures from the Dept of Health which state that the disease is at a low rate in the UK, only 1.7 per 100,000 of the population, and they are dismayed to receive letters from the Health Minister which seem to suggest there is “no Lyme problem” in our country.
Graph of incidence rate in northern Europe
In Germany the incidence is about a quarter of a million NEW cases each year. These statistics also show that twice as many women as men are infected.

It isn’t logical that the UK has the lowest incidence in northern Europe, and only 1 8oth of the incidence of our nearest neighbours, not given our role as the Heathrow Airport of the bird world. Thus patients have no confidence whatsoever in the PHE figures.
Birds are spreading infected ticks around the world
The WHO stated in a 1993 workshop in Slovakia that birds are important vectors of borreliosis 
http://whqlibdoc.who.int/hq/1993/WHO_CDS_VPH_93.132.pdf
Our own tick expert the late Professor Klaus Kurtenbach stated that pheasants and game birds all over the UK are harbouring the infection. Also, we have hundreds of millions if not billions of migratory birds entering and leaving Britain.
The WHO map
The UK was well aware of the emerging incidence of Lyme during the 1980s. By 1989, the data that UK researchers gave to the WHO shows that they found cases of Erythema Borreliosis Migrans all over Britain. 
(http://www.ciesin.org/docs/001-613/map25.gif)
A serious problem, recognised as long ago as 1993
For example, in England, in 1993, NATO held an Advanced Workshop on Lyme disease in London with many European and US doctors and scientists attending.
Oxford tick scientist Dot Carey reported that over 60% of animals, birds and ticks collected from many UK sites were infected with borrelia burgdorferi, and the results were confirmed by DNA polymerase chain reaction tests.
http://ard.bmj.com/content/52/5/387.full.pdf
1993 should have been the year when the whole of the British public was educated about the danger of tick-borne diseases. But they were not warned.
Too many antibiotics?
Some patients believe we are being deprived of antibiotics for reasons of antibiotic stewardship being put before our medical needs.
However, the amount of antibiotics that are used in farming and for pets totals at least the mount used for humans, and might be actually ten times more depending on the unrecorded illicit use in agribusiness.
Perhaps this needs addressing first before worrying about giving patients long-term antibiotics.
A Government warning is needed
We have asked repeatedly for PHE and the D of H to act with the greatest speed to 
a) Warn the public, 
b) Educate doctors 
c) Provide accurate diagnoses 
d) Give adequate treatment
One government advert on TV could begin the awareness in Britain that would soon save thousands of lives from being ruined.
It is not the job of charities and patient groups to make leaflets and distribute them to raise awareness in doctors and the public – this is the responsibility of PHE and the Department of Health.
Why wait for the situation to get worse? Why not act now? In Eastern Europe victims of tick bites go immediately to their doctor and receive antibiotics whether they have had a rash or not. Why keep our UK citizens in the dark?
We are not "disaffected patients.
We are struggling to regain our health while our public servants seem to have washed their hands of us.
In a report on Lyme borreliosis submitted to the Health and Safety Executive, in 2012, PHE refer to us as “disaffected patients”. Their policy is to “manage us”. They propose to train our doctors in ‘“disengagement” strategies’ – in other words, how to get rid of us. PHE’s Professor Dryden recently addressed infectious disease doctors at a conference, calling Lyme a “fashionable disease” and portraying patients as living in a quote: “parallel universe”.
Furthermore the same doctor has also lectured that the ELISA tests are “too sensitive” and are likely to give false positives, with no mention of the possibility of them missing 50% of cases by being falsely negative. Most worrying of all he continues to write to GPs that if the ELISA test is negative then the patient does not have Lyme disease. This is dangerous.
DNA will lead the way
Expert patients are aware of the seronegativity issue and we all know about borrelia’s ability to evade the immune system. This is a major reason we cannot have any faith in the antibody tests used by PHE.
Also, how can we rely on tests that have only been verified by the manufacturers in 54 patients, and then, only in a highly selective cohort, and in comparison to other kits relying on exactly the same methods? This is not validation by any scientific norm. The test kits used by the NHS have never been assessed for their ability to detect an infection in hard to diagnose cases, and those cases are the ones who may turn out to be the most ill due to an inadequate immune response.
PHE have acknowledged that they cannot detect borrelia miyamotoi, yet that strain is confirmed to occur in Britain.
We need to use methods such as those perfected by Eva Sapi and Advanced Laboratory Services in Pennsylvania, or the method using Molecular Beacons as described by Dr MacDonald, or the FDA approved test of Dr Sin Lee in Connecticut.
We should not rely on the detection of antibodies alone, but rather on the detection of the organism itself.
DNA PCR/sequencing technology is the only test available at the moment to detect the newly identified B. Miyamotoi pathogenic borrelia species. PHE antibody screening tests for Lyme disease will not identify this pathogen. What if it were found to be the major cause of Lyme-like diseases in the UK?
We have seen how one particular patient, Demetrios Loukas, has run the gauntlet of a system that is not working. Through serendipity, his own persistence and the sheer good luck of finding knowledgeable doctors and scientists, not forgetting the support from his MP the Minister of Justice, he is on the road to recovery. He has spent all of his savings on treatment prescribed in Germany. He is not alone, as many other patients have been forced to go abroad for successful private diagnosis and treatment.
Pity those, who know that they are infected but cannot access private treatment. Pity even more, those who struggle with their incurable “syndromes” not knowing that they are infected and possibly infecting their children! This situation is shameful.
Health Ministers and Public Health scientists, we call on you to give the British public a fighting chance to beat this epidemic. If necessary, use the expertise already available in European and American commercial labs and collaborate with as many of the knowledgeable scientists as you possibly can.
“The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing.”
“Serology has to be started from scratch with people who don’t know beforehand the results of their research. There are lots of physicians around who wouldn’t touch a Lyme disease patient. They tell the nurse, “You tell the guy to get out of here. I don’t want to see him.” That is shameful. So [this] shame includes physicians who don’t even have the courage to tell a patient, “You have Lyme disease and I don’t know anything about it.””
Willy Burgdorfer 2007


Links to presentation with slides can be found on 
More details about the meeting on an earlier post